Strong, Brave and Hopeful
This fall has been rough for Luella and our family.
Luella began experiencing an increase in seizures over the summer, and in September a severe seizure on the school tennis court resulted in a concussion and eight stitches.
Lingering concussion symptoms followed, and beginning in November she had six seizures in just four weeks. The physical and emotional toll was exhausting for her — and for all of us.
Her tongue took the brunt of every seizure, becoming so badly chewed that she couldn’t speak without excruciating pain. Still, she powered through.
At school, she carried a small writing board, using it to communicate with teachers and classmates. At home, we didn’t hear her voice at all. In band, she couldn’t play her clarinet, so she was moved to percussion for the holiday concert.
We are working with her doctor, adjusting medications and searching for something that will help.
In the middle of the hardest week, I received an email from the Epilepsy Foundation of Minnesota about a Christmas Wish Grant Program through the Strong Brave Hopeful Foundation.
The grant was open to Minnesota families with a child living with epilepsy. I decided to nominate Luella, hoping this might bring a little light during a very dark season.
Less than a week later, I received a call from Luke and Amy Ylvisaker. They had been very touched by Luella’s story and wanted to grant her a $500 Amazon wish list. I couldn’t speak. I cried. I knew how much this would lift Luella’s spirits.
Luella was thrilled to be selected. She’s using her wish list to redecorate her bedroom — something she’s been dreaming of, since her room is still painted exactly as it was when we turned it into a nursery more than 16 years ago.
Luella began having seizures at just nine months old. About a year later, she was diagnosed with Dravet Syndrome.
Over the years, she has experienced hundreds of seizures—periods of weekly or daily seizures, stretches of monthly seizures, a little over two years seizure-free, and now this recent increase.
We are incredibly grateful to Luke and Amy, who started the Strong Brave Hopeful Foundation in 2023 after their 5½-year-old son, Griffin, began having seizures and was later diagnosed with Ring 20 Chromosome Syndrome.
Their mission is to provide support, hope, and encouragement to families navigating unexpected and difficult journeys with their children.
To learn more about the Strong Brave Hopeful Foundation, visit sbhfoundation.org.
To learn more about Dravet Syndrome, visit dravetfoundation.org.
Heather Johnson,
Luverne
